Radiation

Teamkelly said:

Uterine carcinoma sarcoma 3C, in 1 ovary 2 lymph n no radiation

I have a question about why my sister in law who has finished 6 rounds of carbo taxol, has been told by her doctor and doctor at MSK that she is not a candidate for radiation?  I see that most of you have had radiation, is it because they think it has metastised too far that they both are telling her no radiation?

 

Nicki

I as well diagnosed with same cancer (MMMT) 3c, as found in 1 pelvic lymph node.  Doc told me chemo will  kill good/bad cells and with this aggressive cancer want to get everything right out of the cage.  Then come back and hit hard the area (1 pelvic lymph node) where cancer was found.  Main reasoning for my radiation, but as well remember the cancer with us originates normally in uterus.

Not sure why not suggesting radiation for your SIL.  If you don't feel comfortable with the course this doc wishes to take, plse get a second opinion.  Most insurance will cover second opinions.  Remember this is aggressive and we have a better chance of getting it all at the beginning.  Surely don't want to have any recurrences as a bit more difficult to treat as this one moves around a lot.

Hang in there and don't give up....

Jan

Teamkelly said:

Radiation

Thanks Jazzy, yes I know you had a very similar diagnosis as Kelly. You know we did get a second opinion at Sloan, he also said no radiation, I videotaped that apptmt so I will go back and re watch it again. What year did you have radiation? Thanks for everyone's support on here, you ladies are amazing.  

Nicki

Radiation was summer of '09...sandwiched between total of 6 chemo (carbo/taxol). Sorry didn't remember you had second opinion.  I think you've gone to a very reputable hospital and if you feel docs is qualified, go with your gut feeling.  Does this doc have experience withour agressive MMMT?  That's important as not like the garden variety cancer.

MMMT as well is diagnosed in ovarian, have you tried that side of site under that cancer?  Might find help over there...just a thought~

Best,

Jan

HellieC said:

Keeping everything crossed for you

Only a couple more days and you should have the full picture.  You are right about the NHS, it does have strengths and weaknesses.  I have found that their cancer treatment is first class, but that their admin and support (timing for scans, waiting for results, communication. etc etc) is often wide of the mark. 

I did manage to get the surgeon I wanted - I knew the name of the chap who was considered best in the area and so I paid for an initial private consultation and scan and then when cancer was suspected, he happily switched me to his NHS list.  Some would say that using your own money like this gives you an unfair advantage, but apparently it's done all the time.  My view is that I have saved hard for a rainy day and I choose to spend it on health rather than a  holiday or a car - it's just a matter of personal choice. But I thought I'd mention it in case it's a route you hadn't thought of and that could be useful to you in the future.

Hope the news on Wednesday is good

Helen x

 

Just to let all the wonderful people on this site know that I got my results yesterday and the biopsies showed no cancers anywhere else. I don't have all the full details as it was a phone call but it seems all the scarring on my bowel is probably due to endometriosis. So my cancer remains a 1a removed by my hysterectomy. So I have been celebrating. They have said they will not need to give me radiotherapy . So I feel I have been given my life back and I feel very thankful. I hope I can be of some help to those of you who have more to face. I do believe the important thing is to try and remain positive. My friends have been amazing - including my online friends. They make such a difference. Thank you everyone who has sent me good thoughts.

Carol

nancy9 said:

radiation next month

Everyone knows someone.  LOL  I so know that feeling.  I didn't lose that much wait with chemo like everyone who knew someone said I would.  LOL  I have begun to open up more with my Onocologist and have been honest (sometimes brutally) with him.  I crack a lot of jokes and he appreciates my honesty and willingness to ask questions that most patients are too embarrassed to ask.  So needless to say, I stopped listening to the "experts" and I am doing great.  I am going into my 2nd week of radiation and so far so good.  Nothing too major.  Good luck Jennifer!  Keep us updated on how your progress.

This past August I was also diagnosed with stage 4 carcinosarcoma. Since then, I've had carbo/taxal, 6 doses, with a total hyst inbetween. Chemo side effects varied from dose to dose, but all of them gave me muscle & joint pain. Gel ice packs made it tolerable. I lost only 15 pounds in 6 months, but I also watched what I ate. Key to all of this is faith in my doctor. We had to have a meeting of the minds in the beginning, I'm a bit assertive & researched my diagnosis ahead of time. Being a retired RN in critial care, I had a pretty good grasp of the ramifications of this diagnosis. My Dr & I are on the same page reguarding treatment & future care, I trust him implicitly. Yesterday I started 3 doses of vaginal radiation. Not too bad & a breeze compared to chemo! Next will be a ct scan & every 3 month Dr visits. Right now, I'm tired. I too have 'chemo brain,' but I'm looking forward to growing hair, getting my energy back & being able to play with my horses. They have been a healthy diversion. My family has been totally supportive & a major factor in getting through all this! Keeping a good sense of humor is paramount. That and a positive outlook. No matter what happens, there's always something positive.

Keep up your wonderful outlook!!!

Nancy2012

jazzy1 said:

Nicki

Radiation was summer of '09...sandwiched between total of 6 chemo (carbo/taxol). Sorry didn't remember you had second opinion.  I think you've gone to a very reputable hospital and if you feel docs is qualified, go with your gut feeling.  Does this doc have experience withour agressive MMMT?  That's important as not like the garden variety cancer.

MMMT as well is diagnosed in ovarian, have you tried that side of site under that cancer?  Might find help over there...just a thought~

Best,

Jan

 

 

 

 

Yeah, the MSK doc sits on the international uterine carcinoma sarcoma board and he and his boss/partner wrote the current trial for infosamide/taxol which is in it's final stages, in fact this board is the one that has agreed they will all call it uterine carcinoma sarcoma instead of MMMT.

Kelly has her PET on the 26th of March and follow up on 28th, so we will wait and see. Thanks for everything.

Nicki